I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Friday, June 14, 2013

So you are going on a hospital vacation...here is the brochure

As I think about spending the next 6 weeks here at Memorial Sloan Kettering, I at least have some experience to draw from. I have done medical tourism before, and had extended stays here in NYC. These would be the helpful tips I would offer...the Zagat guide for pediatric cancer.

1) What to wear?

Do not consult your local weatherman, because it absolutely does not matter. Hospitals are really cold. They generally keep the thermostat dialed down because warmer temperatures foster germ growth. Inhibiting germ growth is a goal which you will soon appreciate as your child's counts become the barometer for your emotional stability. However, I am a freeze baby, and if we are headed for the "inside," I wear long pants and long sleeves. Even in July.

With the knowledge that I was returning with Brent for another extended stint in hospital, I said that I needed to pick up a couple of more long sleeved shirts and yoga pants...comfortable enough to sleep in, yet reasonable apparel for early morning conversations with doctors. (Ortho, in particular, keep very early hours and are the first to make an appearance, usually around 6am.) Brent teased me. "Really mom? You dress like it is winter. All of the chemo kids will make fun of me!" He is lucky that I resist wearing footie pajamas. If he weren't going to already be on bed rest, I would ground that kid!

2) What to bring?

Obviously, there is the medical stuff. Scans, recent labs, a list of current meds, especially if you are not going to your regular hospital...you know the drill, or will in very short order. This stuff becomes second nature, and the hospital your second home.

During treatment, some things remained in the perpetually packed suitcase that lived in my foyer for the ever present possibility of making a mad dash to the ER. It was like the bag your are supposed to pack and have 'at the ready' late in your pregnancy, only with less to look forward to in using it.

So, in the suitcase, was always a spare phone charger (which is my link to the outside world), extra change of clothing for Brent and me, toiletries, and a pillow for each of us. Hospital pillows are just horrible (sorry, no way around that apparent universal truth) and nothing makes it feel less hospital-ly than a pillow and quilt from home. I would advise washing both the pillowcases and quilt, immediately upon discharge and putting them directly back into the suitcase, so when the neutropenic fever comes, you are at least comfortable for the 2 day stint that such an event mandates. You can mutter about the fever, rather than the fact that you don't have a toothbrush. You will likely mutter one way or the other. Might as well be comfortable while you do it.

3) What to do?

Ok, now I wish that I knew how to knit, or did needlepoint or some sort of portable thing of that ilk. I am writing this from the 15th floor of Sloan-Kettering, where they have a patient recreation center...flower arranging, a pool table, a piano, pottery throwing...a host of things for patients to do. I bet that I could sew up here, but I am rather limited in that we are up here only because Brent is currently in surgery. Once he is out, we will live on M9. I suspect that I might be able to sneak up and borrow a book from the library. They fortunately have a big library.

I am really hoping that Brent's recovery is smooth and boring...such that I might plow through some good books uninterrupted, while he does the same. But this has not been my experience in the past. There are many interruptions, many questions, conversations, and honestly, my mind sometimes cannot focus on what I am reading. That is a function of worry, as well as the environment. No way around either one, so I do not fight it too much. I have very low expectations in this regard, which kind of works for me.

I write, which helps me to process all of this. I try to stay connected with my kids at home, avoiding peak wifi use to Skype, as the connection is frustratingly bad at such times. I scout for the best place to make a phone call...one that affords a bit of privacy as well as decent cell phone reception, both of which are in short supply in most hospitals.

4) Where to eat?

First thing, you should know where to find a decent cup of coffee (It is what makes my world go round. I view this in the same vein as the rules that mandate adults to take the first puff of oxygen on the plane, before administering it to a child) Coffee, is critical.

Food from the cafeteria becomes tiresome and expensive. Every hospital manages food storage differently, but finding out how to bring outside food in will be helpful for you. Especially for your child, as chemo does its devilish work on appetite, bringing in whatever sounds good at the moment is helpful. (and with chemo, even the most agreeable child can become as fickle and changeable as a 3 year old) There comes a point where it is understood that all calories are good calories, and whatever you can get in (and keep in) your child is a victory.

I was advised by a dear friend who went through chemo for breast cancer, that the last meal you eat before chemo, might be ruined forever, so you might want to avoid your favorite meal for the moment. I cannot remember what it was for Brent, although I suspect it might have been pizza...which has been very slow to recover its appeal, post chemo.

5) Where to stay?

Figure out how the floor works. Most pediatric floors provide a cot, or a pull out chair for one parent to stay overnight with your child. Where you use the bathroom and take a shower might not be so obvious. Every hospital has different expectations for parents, and the etiquette is different from hospital to hospital.

For example, at one, you might leave your child alone in their room for a time, or if you must, overnight. (We never did, but had roommates, children, who were alone for chemo. I don't judge...parents have to work in order to maintain insurance, have other children to care for...and we have been blessed with amazing support.) In other hospitals, even leaving the floor for 45 minutes requires arrangements for a surrogate. It is important to know what is expected, regardless of what you are personally comfortable with.

This is different than the week-long chemo vacation. This is more like a transatlantic cruise on the Queen Mary...better than the Nina, Pinta, or Santa Maria, sailing in uncharted waters. But still a long trip. I hope that I packed well.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.